Fall 2013

Fall 2013

Sunday, May 27, 2012

Fighting It

She's a stubborn, determined girl that's for sure. And Miss Maia is determined to NOT go to sleep. She's been fighting it for about 3 1/2 hours. Each time the eyes close, she jerks herself awake, and begins to fuss. Escalated to out of control screaming, arched back, pushing. Got her scheduled Ativan 45 minutes early. Continued to fight sleep for another 20 minutes before finally giving in. It's hard to watch. I'm praying that she sleeps for the rest of the night.

I've had some concern about blood in Maia's stool. Tests are negative for bacterial infection, thank goodness. The specimen they sent yesterday to quantify the blood in the stool isn't back yet. I just asked the nurse about it. Apparently, the lab doesn't run that type of test on the weekend. ????? That surprises me.

Nothing new from an infectious disease standpoint. No new bacteria have shown up today, thank goodness! The neurologists are adding a different anti-seizure medication to the regimen with the goal of this being therapeutic before Maia is ready to go home. They will then discontine one of the ones that she is getting IV now. 

Physical therapy did see Maia this morning and gave us a couple of stretching exercises to work on. Since tomorrow is a holiday, she won't be seen. But on Tuesday, PT and OT will begin working with her. That's going to be so important after the past two weeks on her back.

We had lots of company today. Mark's sister Betsy and her son Gavin came to visit with Mark's parents. One of my friends also stopped in this afternoon. Amy and I have known each other since 3rd grade and I love that we have managed to reconnect over the past couple years! My parents brought Matthew back late this afternoon, tired out from all the "farm work" - lol!  We had dinner together here tonight (thank Jake and Krys for FD's!). Mark and Matthew are home and I'm going to try to get some sleep since Miss Maia is finally peaceful. 

Oh before I forget, we did have some smiles and giggles this afternoon which was fun to see. The nurses were about as excited as we were (they love are sweet girl, too!).

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